Originally created to share news around our craniotomy adventure, the focus of this blog has now shifted to the continuing progress of recovery, general thoughts on life and staying in touch with our great community of friends.

Wednesday, August 25, 2010

This week brings the series of events that catalyzed diagnosis and then surgery two years ago. It was after the welcome back picnics that we first went to the emergency room in what turned out to be the formal beginning of this adventure. The MBA picnic, in particular, is associated in my mind with all these events, and it’s coming up Thursday. Two years provides an interesting perspective: the events are far enough back that they feel over and done, and near enough that they’re still pretty fresh in memory.

Overall, I don’t question any of this, because it is what it is and certainly better than all the alternatives. Yet when, like yesterday, I flat run out of steam in the middle of the day, or when I fall down, or when someone in my family takes care of something I used to do without thought, it feels odd. It feels odd when colleagues see me walking down stairs and say “that’s great!” It is, of course, it’s just an odd place to be in my life that we celebrate that. I’m not complaining: I have a great life and I’ve been very, very lucky. It’s different, though, and the adjustments, large and small, take time.

One of the things I hope changes very soon is to regain the energy to do more contemplation, more often. This recent stretch of time has been too intense and stressful; and whoever thought those words would come out of my keyboard? One of the extraordinary gifts about the kind of work I do and have been lucky enough to have over quite some time now is that I have a lot of control over how and when it gets done. Now it’s up to me to manage the overall load better and improve on my absolute worst capacity, which is to say “no.” That slow haredom that took so very, very much work to appreciate needs to come to the fore more often. On the plus side, the changed approach to eating and daily life seems to be working.

This stressful patch should ease soon, I hope. Maybe as soon as next week, maybe the week after… stay tuned!

Thursday, August 19, 2010

Remember being told to be careful what you wished for, because you might get it? I’m in that situation right now, though in a good way. It will be a few more days at this level of activity and then things should calm down. I hope. Within a week or maybe two after that, the final decision on the project should be made, and then things will switch into a another, better mode. I hope. Christopher Hitchens has recently been quoted as saying that he burned the candle at both ends for many years, and it made a lovely glow. The glow doesn’t seem all that lovely to me, at least in this stage of the burn, but we’ll see how it turns out later.

Anyway, I’m still here and still thinking about writing every day; things are just too hectic right now to be able to get to it. I’ve thought interesting thoughts I’d like to explore with you about the expert eye that sees things that others don’t, and about taking back the pious thoughts I expressed last year about paying better attention to the signals my body sends in the future after this experience; it turns out not to be possible, nor probably very sensible. Now, for example, all kinds of weird things are going on around the edges, all of which I attribute to being tired. What else could it possibly be? In retrospect, all the early warning signals of brain tumor were sufficiently vague and distributed that even if I had paid better attention, I’m not sure what it would have yielded me. Before I run for this day’s sprint, why didn’t anyone ever tell me about shiritaki noodles before? They’re filling and have no calories and no carbs. It’s a great way to manage portion control, which is one of my most difficult challenges.

Off for another day at the races. Thanks for writing and inquiring, and most of all, for caring.

Tuesday, August 10, 2010

Our trip this summer and some recent web-surfing I’ve done has solidified for me, 23 months past surgery, just how lucky we’ve all been through this process and how very many blessings we have to count. First of course, is the fact that the tumor was benign and we had access to a first-rate neurosurgeon who works five blocks from our house. Beyond that, though, was the extraordinary outpouring of support and love we received from so many through this adventure. It sustained us in more ways than you’ll ever know.

The past few years, we had a chance not everyone gets: we got a signal that it would be good to make sure everyone we love knows the depth of our feelings and how much we value each one. And the love we got back was powerfully healing. It insulated us from some of the worst psychological effects that many meningioma patients experience, and that’s an unbelievable blessing, too. While I’m acutely aware that I’m not what I used to be, this version, in this life, is a good place to be.

The travel back, which while relatively smooth as these things go (one flight delayed two hours causing one of those frantic runs through an airport, only to arrive and find that the connecting flight was delayed anyway, luggage that didn’t make it home with us, etc.), underlined for me some of the changes in me this whole experience has brought. For one thing, hard as this may seem to believe, I’m more patient, and more able to let go of things I cannot control. That’s a huge positive step forward that makes our lives that much better. All that practice at slow haredom seems to have paid off. Slowly.

I’ve learned to pace myself better for my current energy reserves, and I automatically built in time to recover from the visual/auditory overload such a trip necessarily entails. It was close to automatic, and I’ve learned to be more accepting of the fact that there are times when getting up and going just isn’t in the cards, like yesterday after the return. I got the mail sorted, laundry done, and, when the suitcases eventually arrived 28 hours late, the unpacking.

It was a good trip, though my writing output was a disappointment. The work in progress took some serious wrestling over structure and direction, and while I got some words on the page, the result was far, far fewer than I’d hoped. Still, I think (hope) that maybe I’m on the right track now, thanks again, to dear friends and readers who were willing to spend time exchanging ideas and nudging me back when I fell off a sensible path.

So, for the status report 23 months later, things are good. My skull has huge dents and it clicks. I still lose my balance when I get overly tired and/or end up in visual/auditory overload. Getting tired happens almost instantly: I go from fine to collapsed with not much warning, and in a new strange artifact, when I push past that point out of necessity, my brain does something I can only describe as clunking all night after that: it fixates on two or three visual images, and they repeat all night. Over and over and over. It reminds me of the sound a tennis shoe makes in the dryer. It’s unpleasant enough that I’m getting pretty adroit (brazen, even) at cutting off whatever is going on and going to bed when I feel that point approaching. That’s been a big change. My shoulder needs more exercise than it gets because it’s a hassle to remember, so it still freezes up now and then. Still no consistent ability to read fiction, though I practiced all summer in small and medium doses and am ever hopeful that will come back. If it doesn’t, I’m finding ways to fill both my craving for narrative and for getting my mind to shut off and focus on other than work. I’m not exactly meditating, but I’m managing my fixations better, all part of this slow haredom that I seem to be settling into. And, now that I’m home, it’s time to start getting serious about all the weight I’ve gained through this process, and I think the emotional energy and discipline might be available to deal with it, finally. I hope. That’s a hedged public commitment!

Most of all, though, is the blessing that all of you are who rallied, helped, encouraged, cared, and were constantly with us through this part of our lives. Thank you, again and again.

Wednesday, August 4, 2010

While lots of people like to do whirlwind trips, full of activity, we like to sink into the atmosphere of a place and learn it in depth. I guess this is in some ways like the life decisions we made to grow in place, which carries both challenges and benefits. There’s a lot that’s nice about long-term relationships with neighbors, friends, businesses, and colleagues. We chose the staying-in-place approach for a lot of reasons, though at least for me, the root reason was providing stability and security for our family--and me. Of course, while the up side is that people know and trust you, the down side is that people know you and your weaknesses, too. It’s hard to hide those over thirty or forty years knowing the same people.

We do a lot of what we think of as “spot” travel when we go places when I give talks. We stay for a weekend or a few days, hit some of the highlights and get the flavor of a place. More to our taste, though, is really stopping and getting to know the texture and rhythms of a place, as we do when we come here every year. And, of course, pretty much everywhere we go, especially non-US countries, we visit hardware and grocery stores. Lots of people visit museums, and we do that, too, but we never miss the chance to check out what the local hardware store--not a chain if possible--carries and is like. When we’re in the midst of a big project, we inevitably end up at a big chain for the variety and quantity, but for figuring out how people live, there’s nothing like the hardware stores and grocery stores. As you might guess, the hardware stores are Michael’s particular passion and an acquired taste on my part.

Both the hardware stores and grocery stores here have changed remarkably over the years. The mom-and-pop hardware stores are disappearing at a breathtaking rate, and the grocery stores carry more prepared foods now than would have been conceivable even five years ago. Two years ago, our main grocery store had ripped out a huge section of traditional foods and installed two or three huge rows of frozen food cases, something we thought we’d never see in a place where there have always been one specialty food chain (not hugely popular) for frozen food. And did we mention that the pharmacies here carry pet medicines and supplies as a matter of course?

As we prepare to wrap up our summer sojourn for the year, Michael is making one last hardware store run to do a few last fixes: window blinds, dehumidifier supplies, replacement locks for the doors that were broken into this year. I’m still struggling with the book and continuing to practice reading a little bit every day. We have some of the family favorites from years of yore here--most YA level books--and I’m trying to do some reading every day. I have no idea if this is how to retrain my brain, but it’s my current effort. Cannot hurt anything, I figure. We’re thinking of you all. Cheers.

Our Medical Adventure

In late August 2008, Tina was diagnosed with a large meningioma in her left parietal lobe. It was successfully removed on September 10. The very first entry from September (The Beginning) provides some background information.